Several of our members
have participated or are currently participating in a trial. Here is
what they have to say:
“I am currently
participating in a study on a drug by Knoll Pharma called D2E7. So far I
am seeing wonderful results and am very pleased that I took the chance
and went for it.
It is a little scary participating in a
study where you know nothing about what may happen but as I have said, I
had gotten to the point where nothing was working anymore and I told
myself that if I was to get just one good day I would be happy. I am
very fortunate that the initial stage of the study was for a 6 month
double blind and I did very well and so am sure that I was receiving
some form of the drug. In 2 weeks I will be starting the next phase
where everyone will be receiving the same dosage and this phase of the
study will last for 2 years. My hope is that at the end of this time,
everyone will have done well and that the drug will be marketed. BETTER
YET – wouldn’t it be wonderful if it was also affordable for
“Using I.V.Gamma Globuline for jra.
I had no problems with the study itself however, I gained no benefit
arthritis-wise. It did do wonders for my infection rate and so am still
on it but only on an infection fighting dose. I am currently part of a
quality of life study before and following cortio-steriod injections. It
was easy to participate in because you only fill out questionnaires. The
results are yet to be determined.
I think that you have to be very
careful about drug trials and clinical studies. Talk to more than one
doctor and especially not only to the person conducting the trial.
Something in my past, taught me that doctors sometimes have selective
memory and sometimes give you only the information that they feel will
push you in the direction they want you to take. Ask a lot of questions
because I found out that the negatives are not always revealed until you
start asking more indepth questions or you bring up something you found
out on your own. Just as a side note: Thanks to all of you present and
past, who have had the courage to try out the drugs we now use. You are
truly brave souls.” -Mouskie
“I was in the study for Colloral.
I had good results, come to find out I was on placebo.
I figure if I can find something that
can help me or someone else get through this hell, then it’s worth the
chance I’m taking, I always have my RD’s approval prior to enrolling in
the study programs or trying to enroll.” -Tery
I think we owe those folks a great big thank you! Without brave people
like you, we would not have all the treatment choices that we have. I am
sure I speak for the entire community, “THANK YOU!”